It hit me like a tonne of bricks. I had never been so scared in my life.
Lying on the neurologist’s couch at my local hospital, my doctor is curious why I was experiencing such painful tummy problems. It is unrelated to my reason for visiting the neurology department.
It can’t be a big deal. Since I am in here, might as well do a quick examination. A short while later, the results are back. The doctor gasps.
“Sue, I’m sorry,” he said. “There are cysts in both your kidneys. We’re referring you to the renal department immediately.”
“What?!! But I’ve already got a neurological condition. Am I going to die now?”
This was my first thought of a hundred that followed. My mind was going in all sorts of directions at 1,000 miles an hour.
That was it. That was the last time this medical team could talk to me about my cysts. It wasn’t their fault. They did not have the knowledge or experience to advise me any further. My physician (general practitioner) could not help either.
Had I not taken good care of myself. Tests carried out later on showed I was in the ten percent of people who develop the condition spontaneously. The other 90% who developed cysts had inherited it from their genes.
Having no clue about PKD, I thought I was going to die ahead of my time. I was in denial. Why can’t I just pinch myself and wake up from this nightmare? My body was already being decimated by my neurological condition. What on Earth was left for me to do?
I did not need this.
But, no matter how much I tried to escape the truth, I had to wake up and smell the coffee. It was do or die.
I knew I had kidneys in my body and, like most people, blissfully assuming the kidneys were happily, merrily filtering my blood from toxins. Surely, there must be a pill to make the cysts go away?
Nope. There is no such pill. I was walking into unknown territory.
Being told there was no cure left me collapsed in a heap. When the kidneys stop working you either have dialysis for the rest of your life, have a transplant or simply die.
Denial is not place where a sane person can take permanent residence. Sooner or later, you have to face the truth. This is the time when you have an overwhelming desire to get to the bottom of it.
When I was diagnosed with PKD in 1993, I had an added challenge. It would be another 5 years before the birth of Google and 12 years before YouTube would make its appearance on the world stage. The only available information were the questions I dared to ask the “experts”.
My physician knew next to nothing about PKD. Unless I could reveal symptoms that could be medically treated, it felt like they wanted to ignore that I had PKD. That means pharmaceutically eradicate the problem or surgically remove it.
Basic medical books were my only source of information. When the internet became more user-friendly, instead of raising my awareness, it became a frightening place to look for answers.
I was intimidated by pictures of giant kidneys full of cysts. I knew the right questions to ask. However, I wanted to bury my head in the sand in anticipation of the answers I would get. I was scaring myself with my over-analysis and the anxiety that came with it.
Truth be told, I was resigned to having a rapidly deteriorating body followed by the onset of early death. The thought of my fate broke my heart. I had “settled”.
Gradually, I downsized my career as a professional project manager to eventually a woman on permanent sick leave. I searched for answers almost reluctantly. But, out of the blue, things changed. In 2018, I met my mentor, Harun Rabbani. He told me,
“Do not settle with your life as it is. You were born for much greater things.”
My logical mind needed more convincing, but something deep inside told me he was speaking the truth. This was the first time since my diagnosis realised, somehow, I could get my life back. Maybe, just maybe I can get rid of this wretched PKD.
I was tired of playing the victim albeit in my own head. Enough was enough. Victimhood is not my thing and I will not be a “sufferer” of PKD. The PKD did not own me. I had to own the PKD. I had to take responsibility for what was in my control.
By this point, I had already started changing my mindset. Having someone who believes in you makes a huge difference. How often do you get reminded that you are far more powerful than you’ve been led to believe? That you can achieve anything you choose to do without limits?
This is not an illusion. It is empowering because it is real.
Up till now, I had been merely existing. Just surviving. Today, I am thriving. I have my freedom back as I discovered I had so much more to live for.
Life can and does throw curve balls from time to time. It is not about what happens to us that matters as much as how we deal with what happens. Of course, it can feel like it’s all too much. In fact, denial becomes a natural option. Nobody wants to believe this is happening. At some point, we have to dust ourselves off and stand up on our own two feet.
We do not have to be a victim of circumstance. You do not have to “fight” PKD to get your life back. It is far more effective and empowering to learn how to navigate your life with PKD still present.
The good news now is that you are not alone, nor do you have to rely solely on medical information. Getting a complete understanding of how you can be fully alive with PKD will give you choices. You can have your freedom back. You can be happy again.
I desperately needed to ensure my kidneys were safe. I also eventually discovered the missing pieces that would ensure I regained my energy. This had and still has a direct effect on the relationships that matter most to me. My relationships with my sons, grandchildren, family members and dearest friends.
By nature, all humans are compassionate they want to help. Getting clarity about what it takes to reclaim your health is vital. It becomes far easier to help my family and friends understand and support you on your life journey. I know this can work for you. I have done it.
Just surviving with PKD is a one-dimensional path to a sad demise. Thriving with PKD is about adapting your lifestyle with a multi-dimensional approach. I’ve researched, tested, tweaked, re-adjusted and, today, live an optimal healthy lifestyle with PKD.
I talk about this in detail and how you can also reclaim your life during my interview early this year with Harun Rabbani. Get FREE access to that interview about managing life with PKD. Click here to access it now!
Written by Sue Jobson, PKD Health Coach